Our Program:
The Northern California Comprehensive Thalassemia Center at UCSF Benioff Children’s Hospital Oakland is the largest thalassemia program in the US. It was established in 1991 to deliver comprehensive care to the growing number of thalassemia patients in the region. Our center has more than 200 patients on active followup and over 800 patient visits every year. It is one of the few NIH funded centers in the nation. We are also at the forefront of research to develop new treatments for thalassemia. Over the 25 years of its existence, the Center has had a major impact on the care of thalassemia both nationally and internationally. Dr. Ashutosh Lal is the Director of the Program.
Services We Provide:
Once universally fatal, today thalassemia can be treated as a chronic disease. The major cause of illness and mortality has shifted from hemoglobin-deficient anemia to iron overload associated with chronic blood transfusion therapy. Children’s offers families a range of therapies to monitor and enhance hemoglobin levels, maintain and improve chelation therapy, and provide support for patients and their families with thalassemia. With medical advances, leading-edge technology, and scientific research, children with thalassemia are living well into adulthood. As a result, we also provide care to adults with thalassemia. Each year we host a thalassemia retreat, the only one of its kind that offers psychosocial support to teens and adults from around the country.
Comprehensive Care:
Children’s emphasizes a multidisciplinary approach to maintaining good health. We have specialty cardiac, liver, endocrine, vision, dental, audiology (hearing) and nutrition clinics. In addition, specialized nurses, social workers, genetic counselors, teachers, child life specialists, psychologists and other healthcare professionals work closely with the medical staff to provide support to patients and their families.
Our Facilities:
- 20-bed day transfusion and chemotherapy unit, including a pheresis program
- 25 inpatient beds on the hematology/ oncology unit with private, filtered-air isolation rooms
- A bone marrow transplant unit and available housing for families during a child’s extended treatment.
- A multi-disciplinary intrauterine therapy center for alpha thalassemia major.
Research:
Children’s Hospital has a renowned thalassemia research program. Our research allows us to offer patients and families the most up-to-date and innovative therapies. Research done at Children’s has led to many advances in thalassemia treatment. As part of each thalassemia patient’s care, we consult with your family about studies your child may be qualified to participate in. Patients are never obligated to join any study; if a family chooses not to participate in a study, their child will still receive high quality healthcare. Our research and clinical teams work together to provide the highest quality, integrated healthcare possible. We look forward to talking to you and your family about research studies available for patients.
Updated 1/5/2017
